Shingles without the rash

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For about two weeks I was experiencing pain on my right side, around my rib area to under my breast bone. It was an odd pain, nothing like I've had before, it felt as though someone punched me really hard. I thought it was just a muscle strain from so much coughing as I had pneumonia, but the pain didn't go away when the coughdid, the pain got worse, and it was constant and would not respond to over the counter pain meds. It got to the point I was crying from the pain. All I can describe it as if someone beat the s**t out of me and left me there, or a car ran over my side. I had no burning, no tingling, no rash. It is a scary pain.

Nonetheless I was still diagnosed with shingles, and given anti virals and pain meds. Within a week I felt a lot better, now the pain is mostly gone, thank God.

Shingles also makes you feel lightheaded, faint, weak, unwell in yourself, not right. Before I got the pain I had a few days of feeling really weak and not right and thought I was going to pass out. Funny that as I remember a day before I got Chicken Pox, years ago, I felt really off.

Terrible thing to get. Now fearing getting it again so will look into a vaccine.

Just wanted to post this in case there are any of you who are wondering if its possible to have shingles without the rash. Yes, it is. Not common, but possible. It is also possible for the band of pain to shift, rather than just stay in one place. In my case my pain started on my right side, then went to my left side, same area of my rib/breastbone.

Hope this helps some people - if this is you, go to your doctor, the anti virals really work fast and the pain meds make it bearable. Paracetamol is not enough for this. Neither is co-codamol. You need either a med that dulls the nerve endings, or an opiate

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  • Posted

    Hi Danielle,

    I have been suffering with odd sharp stabbing and sometimes burning pain in my left side and back near kidneys.  I went to ER 3 times and they keep telling me its muscuslar.  I have been to my pain management doc and she ordered MRI and I am patiently waiting for results,  This pain was very odd and came on suddenly while I was sitting watching tv, no bending or stretching, just sitting and its a pain like I never felt before.  I have a history of low back pain and this is completely different animal if you know what I mean.  Doc said could be herniated disk which is rare in the thoracic spine but possible.  Taking gabapentin and percocet and doesn't do much.  I cannot sit without this pain stabbing me no matter what position.  Only relief is lying down on my stomach until it settles and then if I am lucky on the good side for a bit.  Its horrible and I hope I get diagnosed soon.  I am insisting on a shingles blood test even though I haven't got a rash.

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    • Posted

      It sounds like shingles with the lesions -- it's possible. I had it and now have a chronic condition called post herpatic neuralgia. The only medication that helped is methadone, which is used for chronic nerve pain. Good luck. Lorraine
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    • Posted

      Hello,

      I'm wondering what you found out  about your pain. I am now going through something remarkably similar - left side back, flank and into the front pain that has been going on for 5 weeks now. Sitting is the worst! I am now scheduled for an MRI - doc thinks it might be a thoracic spine disc problem and also says it's rare. The pain came on pretty suddenly. I'm on high doses of ibuprofen, went through a round of steroids, and take a tramadol before bed. I am wondering - could this be shingles??? Please let me know what yours turned out to be - I feel like I'm losing my mind sad

      thank you

      Terry

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    • Posted

      Terry,

      What type of pain are you having? Is it constant or intermittent? Is it stabbing, sharp, dull, burning, lancinating, electric, severe?

      Can you sleep?

      Was the pain preceded by symptoms such as headache, joint and muscle aches, fever, chills and sweating, malaise, weakness, or fatigue, etc?

      How old are you? Do you have any other medical conditions or diseases. Any autoimmune diseases? Are you immunocompromised?

      After the MRI, if it is negative, and the thoracic region usually doesn't have disc disease, I would consider "Zoster Sine Herpete," or Shingles without the rash.

      I am a nurse practitioner in the States. I have had Herpes Zoster Oticus in my right ear every three to five weeks for the last 20 years. Best Wishes

      Merry Juliana

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    • Posted

      Hi Merry,

      Although the pain is pretty constant, it is not always severe. The worst is when I first get up in the morning, after sitting (on the toilet!). Then the pain starts and remains pretty bad for a few hours. I usually cannot sit without pain. Some mornings the pain starts before I get out of bed (like this morning). I sometimes feel weird electrical tingly feelings in my back when I'm laying down. I had this pain in March, but nowhere near as severe, and it went away on its own. Then it started up gangbusters in the beginning of May. There was nothing preceding it that I can recall. Some nights I do an awful lot of sweating, but I do not have chills. I have been exhausted, probably because my sleep is so disrupted.  Two days ago, out of the blue, I had NO PAIN ALL DAY!!!! It was pretty exciting I must say! But then it came back sad I have Hashimoto's, and last year I went through a bout of Lyme disease. There are times when the pain nears 10, and when it's just background pain it's around 3 - 4. I had a CT scan that showed mild degenerative changes in my spine, but a radiologist I went to said he doesn't think my spine is at fault - said my spine is no worse than others my age. At a follow up with an ortho doc yesterday, he asked if I had touched my back - that it looked red. I said I dunno, I guess so. That got me to thinking and I looked at my back this morning. Lo and behold, right where my pain wraps, there is a rash - very minor, just little red bumps covering an area maybe 1/2 the size of my hand. Kinda like in streaks. SO now I'm thinking....shingles????

      Thanks for any thoughts on this -

      Terry

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    • Posted

      Hi Merry,

      Although the pain is pretty constant, it is not always severe. The worst is when I first get up in the morning, after sitting (on the toilet!). Then the pain starts and remains pretty bad for a few hours. I usually cannot sit without pain. Some mornings the pain starts before I get out of bed (like this morning). I sometimes feel weird electrical tingly feelings in my back when I'm laying down. I had this pain in March, but nowhere near as severe, and it went away on its own. Then it started up gangbusters in the beginning of May. There was nothing preceding it that I can recall. Some nights I do an awful lot of sweating, but I do not have chills. I have been exhausted, probably because my sleep is so disrupted.  Two days ago, out of the blue, I had NO PAIN ALL DAY!!!! It was pretty exciting I must say! But then it came back sad I have Hashimoto's, and last year I went through a bout of Lyme disease. There are times when the pain nears 10, and when it's just background pain it's around 3 - 4. I had a CT scan that showed mild degenerative changes in my spine, but a radiologist I went to said he doesn't think my spine is at fault - said my spine is no worse than others my age. At a follow up with an ortho doc yesterday, he asked if I had touched my back - that it looked red. I said I dunno, I guess so. That got me to thinking and I looked at my back this morning. Lo and behold, right where my pain wraps, there is a rash - very minor, just little red bumps covering an area maybe 1/2 the size of my hand. Kinda like in streaks. SO now I'm thinking....shingles????

      Thanks for any thoughts on this -

      ​Terry

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    • Posted

      HI Merry, I have had the pain for over 3 months now. I take advail or asprin everyday which some times works. What else can I take or do? I am a pilot so I can't take pain medicine.
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    • Posted

      Dear Help,

      I had typed a long response to you yesterday, but as I am on holiday in the Ozarks in Arkansas, the reception has been spotty and I lost the entire response. So sorry...

      Could you kindly tell me where the rash was and the pain is? Also, how old are you? I am assuming you are in relatively good medical shape.

      As a nurse practitioner, I also could not take central nervous system mind altering medications that would affect my judgment. I know that I have responded to another pilot who asked the same question. If you could respond ASAP to my questions, I do have solutions.

      All the Best

      Merry Juliana

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    • Posted

      Hi and thanks for reply. I am 59 the pain is on my right side of chest. I had the rash for 1-2 weeks in the begining of March. Pain has never gone away, don't sleep thru the night. I have just been dealing with it.No rash but I have the bruising marks still on the right side.

      Looking at going to Doctor again, reaching out to anyone with answers.

      Thanks,

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    • Posted

      Hi Help,

      I just lost my entire response! YIKES! You have Post Herpetic Neuralgia PHN. It is chronic pain from the Herpes Zoster-Shingles.

      My strong suggestion is to consult with a Board Certified Anesthesiologist - Pain Specialist in a University setting. Find one that has trained fairly recently. Are you from the US or UK? Make certain he trained at a respected medical school, residency, fellowship, etc. Just as you would not fly with "rubber-band airlines,"" do not allow anyone to touch you who did not train at an accomplished college/hospital program.

      I will send Part I

      Merry Juliana

      Part II coming...

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    • Posted

      Hi Help,

      The Board Certified Anesthesiologist-Pain Specialist will evaluate you for different modalities of treatments. As Herpes Zoster-Shingles pain and rash emanates from the ganglion of the sensory nerve root supplying the thoracic (chest) dermatome, he would first pinpoint the thoracic vertebrae. There are a couple of modalities he could offer.

      The first is an injection of Corticosteroids/Lidocaine -type medication to the area of the sensory nerve root under fluoroscopy.

      Corticosteroids are Prednisone type drugs that reduce inflammation. Lidocaine drugs numb the pain.

      The second option is an ablation ( destruction ) of the sensory spinal nerve, also under fluoroscopy.

      This is also called a rhizotomy.

      He may have other ideas, such as a Lidocaine patch applied to the painful area.

      You may read on these posts about taking Lysine etc. I eat a healthy diet, but have had an extremely stressful life. After an acrimonious divorce, I was a single mother and returned to grad school and became a nurse practitioner. It is a great and rewarding profession, but stressful as lives depend on you.

      Please let me know how you do. Where do you live? I know the CCA is as strict as the FAA. Please feel free to ask more questions. I really do care about you.

      Also...

      There is a new vaccine by GlaxoSmithKline coming in 2016 for Herpes Zoster-Shingles. It is supposed to be highly efficacious 97-99% compared to Zostavax, which had a rate of ~53-57%. I would highly recommend getting the vaccine (after the first year-you never want to be the first guinea pig!) as you do not wish to have recurrent Herpes Zoster-Shingles.

      Best Wishes

      Merry Juliana

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    • Posted

      Hi Merry,

      I have severe pain on the left side of my head face and neck. It feel like a pick is being jabbed in my ear constantly. I also have pain in my teeth and throat on that side. Could this be Herpes Zoster? I had shingles 12 years ago on the same side of my face which started in my eye at that time, similar pain. HELP!

      Maria

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    • Posted

      Maria,

      If the pain is similar to the one you experienced the last time, and an ice pick type headache, onesided certainly sounds like one, please see your physician ASAP! You need to start on an antiviral immediately!

      Sometimes the rash is slow to appear or fails to appear (Zoster Sine Herpete)

      I will contin Post

      Best regards

      Merry Juliana

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    • Posted

      Hi Taddyb... have you received a clear diagnosis for your condition yet?  I have very similar symptoms.  Doctors haven't helped.

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    • Posted

      Hi Terry... were you able to get a definitive diagnosis for your symptoms.  I've had very similar symptoms, including a positive Eliza test for Lyme, although the western blot is negative.  I had moderate burning in my right flank followed by patches of red bumps on my right back / flank where the burning originated.  The bumps haven't developed into blisters yet and they aren't terribly painful.  Just very itchy.  I get occational sharp pains in my right abdomen that last a couple seconds.  They almost feel like pin pricks.  Any thoughts?  

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    • Posted

      Hello Merry J,

      I've read quite a bit of this discussion as I have had similar symptoms over the last two years to what is being discussed.  In fact, I would say that mine are exactly like what is described for PHN except for one major exception.  My pain is bilateral.  I definitely have skin pain on both sides of my body - my entire scalp, lower ribs to abdomen, and my lower back.  I also have one-sided pain - left ear (pain and ringing), pain under my left bicep, and occasionally the scalp pain is just on the left side.  There are times when other small patches are affected but that is rare.  I am a 57 yr old male and have never been diagnosed with any type of immunodeppressive ailment.  My only viral history that might be applicable would be getting a cold sore when I run a high fever.  I did have chicken pox as a child, and never had the shingles vaccine.  However I have never exhibited anything like a shingles rash.

      So I guess my first question would be whether two-sided pain is a non-starter for PHN?

      Thanks,

      Michael

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    • Posted

      Hi T brain!

      Although Shingles usually affects one side of the body and only one dermatome, it certainly can affect more than one dermatome and both sides of the body.

      I would be more concerned that you are immunocompromised in some way. I have recurrent Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty years and twice in my right eye. That is not normal. I am immunocompromised, but it was not apparent initially.

      Look at a dermatome chart and see if your pain follows a specific pattern of dermatome (s).

      Also, is your pain of a burning, lancinating, itching quality?

      Please Google the Lysine-Arginine Herpes Shingles diet and try to follow a high Lysine low Arginine diet. I am not a health food fanatic, but eat a balanced diet. I was eating nuts and legumes to attain a healthier cholesterol, and I love nuts. Big mistake!

      They are high in Lysine and were triggering severe eisodes of Herpes Zoster-Shingles. I have virtually ceased eating them, and have not had an episode in over four months. This is a huge relief for me compared to the agonizing, intractable headache every three weeks, etc....

      Tbrain, you are a vintage 1957 baby! I am a 51! Let me know how else I can help you....

      Are you on any medications for PHN such as Neurontin, Cymbalta or Venlafaxine? Do you have fatigue and malaise and exhaustion?

      Happy New Year

      Merry Juliana

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    • Posted

      Merry19451......your post said eat a high lysine diet, but then you said high lysine was bad because you ate nuts and they were high lysine.

      I am a bit confused.

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    • Posted

      Thanks Merry.  I would describe the pain as being more of the moderate to severe sunburn variety.  No stabbing or itching.  The areas I'm experiencing it in would be parts of several dermatomes.  I can list them if you'd like, but I don't see an obvious pattern.  I do not have any medical history of being immunosuppressed, but I haven't been tested for every type of illness that would suppress the immune system (negative HIV is all I know for sure).  I have arthritis in parts of my hands, neck and back if that counts.  I'm not sure if it's pertinent, but in the last ten years I've had several nerve related surgeries - carpal tunnel releases on both hands, and a cervical disc compression/fusion at C-4/5.

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    • Posted

      I did not completely answer your questions.  I take a Lysine supplement every day, but I see some problems with my diet since I eat a lot of almonds and fruit.  That will be a tough loss, but it is what it is.  It's good to hear that you've had some luck in that respect!  I would say I have slight fatigue from time to time, but nothing unusual for a 57 year old man.  I have not been put on any medications for this condition yet as it has not been diagnosed by anyone other than you and me.

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    • Posted

      Is it possible for shingles to be confused with severe tooth infection? I started noticing pain in my jaw about 5 or 6 days ago. When it got worse I made an appointment with the dentist and went this last Thursday. It wasn't obvious from the x-rays or from the testing which of my three back teeth it was so he wants to send me to another specialist. But the pain continues into my jaw and up into my ear. I started gettin nausea, a headache, and the scalp on same side as tooth getting just a little sensitive. The nausea started before I started any medication so it can't be from that. Exactly one year ago I did get my first bout of shingles on my head on the opposite side. I went to the Urgent Care yesterday and told Dr. about the shingles and got an antiviral. So I'm currently taking meds for both as I'm afraid of consequences of stopping either. I've no rash or sores but a lot of shooting pain to the ear. My teeth on that side are very sensitive to temperature. So I'm confused which i may have-but hopefully not both.

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    • Posted

      Amber,

      Was this a recent post?

      In one post several months ago, I erred late one night. The correct information is eat a diet high in Lysine and low in Arginine.

      I am terribly sorry for the confusion.

      The diet changes have truly helped me and I hope this helps you.

      Happy New Year.

      Merry Juliana

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    • Posted

      Hi Trea!

      Sorry for the delay in responding. My internet provider is sketchy here in Delaware. I would think it is a tooth abscess if your teeth are sensitive. Sometimes, you can have both when your immune system is fighting an infection. How are you doing now?

      Merry Juliana

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    • Posted

      I am sorry, Amber....

      Sometimes, I post late at night, responding to many people who have been diagnosed with Herpes Zoster-Shingles. I have no way of finding which post and editing it.

      Again, the correct information is,

      Eat a diet high in Lysine and low in Arginine.

      I hope you are feeling better.

      Merry Juliana.

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    • Posted

      Thanks. It's ok. I was just concerned because I eat a lot of nuts like almonds and walnuts too. When you posted that your diet consisted of too many nuts I was concerned about it. I thought I was doing good by eating almonds and drinking almond milk versus dairy.

      I never had a rash from shingles, so I was not convinced my severe pain and numbness was for sure even shingles. Especially since I still have numbness. And now I have a bulge in my gut.

      The doctors were treating me for internal shingles when I think what I really have nerve entrapment from an iguinial hernia.

      You would think after 13 doctor visits somebody would have figured it out!!! We have to do our own research because doctors these days don't listen.

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    • Posted

      Amber,

      The good news is that for me I haven't had Herpes Zoster-Shingles since I changed my diet to high Lysine and low Arginine.

      I just want other people to share in my wonderful great fortune after the suffering for twenty years.

      Yes, indeed, it is rare when Physicians do listen....

      I am a Nurse Practitioner and I listen and take my time with patients.

      I have diagnosed my own severe lumbar stenosis and cervical stenosis, and two strokes...And had to push for the appropriate surgeries and treatments....

      Best wishes

      Merry Juliana

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    • Posted

      Yep, it was tooth. I did start taking the antiviral for shingles until the endodontist confirmed the tooth then I stopped it. I'll save it for, heaven forbid, the shingles ever does return. It was all the same symptoms, except the jaw pain.

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    • Posted

      Glad you are doing better! Finding a decent doctor is getting unreal.

      I know that arginine can set off herpes. I think nuts have a higher arginine if too much. Ratios have to be balanced.

      I also have stenosis is my spine. Scoliosis, and 15 herniations also, so any added issues I sure don't need. With all of today's food additives it's harder to find healthy food unless you grow your own. You would think eating healthy would not be so hard.

      I'm still struggling, but still trying. Keeping internal inflammation down is a key to reducing pain too. I feel like I practically own a health store with all I have tried. Lol.

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    • Posted

      I have severe food allergies, and cannot eat processed foods with additives. I have had anaphylaxis to them....

      My wonderful internist retired a year ago, and I have been trying to find a replacement for her. She was old school, and I miss her. Some young ones are either lazy and or cannot put a complicated case like mine together....It is scary to be a patient, now...

      Where do you live, if I may ask? I live in Delaware USA.

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    • Posted

      Yes, keep the Antivirals....You never know....

      It is difficult to differentiate the pain, at first. I hope you are doing much better, now.

      Merry Juliana

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    • Posted

      I am from Ohio, but currently in Florida.

      I had a good doctor I liked in 1999, but he quit and went to VA. I was happy for the VA, but sad for myself Lol. I have had trouble finding a good doctor since him. So I sympathize with you.

      I too have so many issues that I feel I am also too complicated and they just don't want to bother with me. I practically spell it all out for them, too. I have found that doctors do not like for you to ask questions either. Food is also my enemy in so many ways. So many I am

      highly sensitive to. Thankfully no serious allergies however.

      Physical issues and depression issues at same time are tough. I am very sympathetic to people that suffer this way.

      I hope you find a replacement doctor soon!!

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    • Posted

      I am originally from NJ, have lived in New Hampshire, Connecticut, New York, California, Delaware, and Germany.

      Best of luck with the new internist....

      Merry Juliana

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    • Posted

      I will be very curious to find out what this completely dead feeling in my hip is. The skin feels dead. I wish there was a way to know if a person did have shingles. I think things going wrong internally are scary.
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    • Posted

      As you mentioned you had many levels of herniated discs, the numbness in your hip might be caused by your herniated discs.

      Merry Juliana

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    • Posted

      My first thought was it was my back issues, but was told it was not. Like I said......getting help is not easy. 9 visits in one week and 6 weeks later.....still don't know.

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    • Posted

      Hi trea54. In Nov I drove from Texas to Virginia. The first night in a hotel, I slept with a heating pad over my mouth/face. I wondered if I had an infected tooth! On the second day of my drive, the right side of my face felt prickly! I thought maybe it was from the ac blowing on my face.

      The next morning, I woke up with a rash on the right side of my face up to my hair line on my forehead and by my ear. The next day, my lips were swollen, I could barely tolerate the application of hydrocortisone cream to my swollen nose and my teeth on the right side were painful! If I bit down I would have horrible pain in my teeth. I also had pain in my ear. I went to an ophthalmologist. He said the shingles was a close as it could possibly be to my eye without being in my eye!

      The teeth sensitivity to temperature and eye pain gradually faded. Every once in a while I will get some evil zaps to the right side of my face.

      I hope you're feeling better!

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    • Posted

      Hi merry,

      I have been experiencing intense itching, stinging and aching on my right side of my back and chest, I have no rash, im 15 and have been to doctors and they said if it was shingles a rash would have appeared by now, do you have any idea what this is ? Could it be shingles with no rash ? Its kept me off school for 2 days as it is so unpleasant. PLEASE HELP !!!

      Laura.

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    • Posted

      Hi Merry,

      Yes, yes, yes.

      Reaching out to you as I am beside myself trying to figure out what is wrong with me.

      I had chicken pox when I was 5. Shingles at 30.

      Recently as a 58 yo. I experienced recurring attacks of feeling unwell, insomnia, sweating/chills, nausea/vomiting, ringing in my ears, irritability, tingling in my extremities, fatigue, (no rash) accompanied with intermittent tazer pains on my left side where my bra band would be. I could feel the tazer shock growing at onset to the full blown shock that would last about a minute.

      Worried that it was my heart, I went to the ER. After having every cardiac test, the good news was my heart was great. The cardiologist, in trying to figure out what was wrong was reviewing my medical history which includes (T4 toxicosis - precursor to Graves' disease) and shingles. When he said shingles, I replied "oh yeah, I had that once and boy, I never want to experience that again". When he asked where it started my hand went right to my left shoulder blade and then traced the line all the while encountering all of the areas that were causing me pain.

      A lightbulb literally went off in my head. The random malaise I had been suffering with for years, I KNEW was related to a virus related to shingles.

      For decades, I've mentioned to my Dr that I don't feel well. This usually ends up with a prescription for an anti-depressant. (BTW, I don't feel depressed, sick yes, depressed no).

      My GP suggested I get the shingles vaccine, which I did (a couple of weeks ago). She also prescribed Cymbalta. I havent taken that yet as I a) don't want to take it and b) I feel it is not the proper course of treatment.

      Reading that you are experiencing consistent, recurring "episodes" ring true to me.

      Can you tell me what tests I should be getting to help diagnose this?

      Also please tell me there is a way to treat this, as you well know, this sucks.

      Thank you,

      Didi

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    • Posted

      Hi Didi,

      Sorry for the delayed response. I was at Johns Hopkins yesterday getting an all day consultation for auto immune disease and then today bringing my beloved 21 year old cat to the vet....

      First, how is your thyroid disease now?

      There is a definite relationship between autoimmune thyroid disease and Herpes Zoster Shingles.

      Is the location of the taser type pain the left side of the chest along bra band the same area as your initial previous shingles episode?

      It is difficult to test for Herpes Zoster via blood work. Without the rash, testing for the antibodies IgG only tells you you have had the varicella virus, chicken pox, shingles, or now, been vaccinated.

      IgM informs the physician that you have the acute illness of shingles, but is not that accurate, meaning the following:

      You can still have a "negative " result and have shingles as the timing of the test is wrong or other factors. If it is positive, you definitely have shingles. Usually, if you have shingles, the pain which is lancinating, burning, electric, is constant. The degree of pain can fluctuate, due to stimuli, but the pain is always there.

      Shingles without the rash is called

      "Zoster Sine Herpete."

      Your physician did prescribe you an appropriate medication Cymbalta for Herpes Zoster Shingles as it is used for neuralgia. I am on Venlafaxine, another older SNRI, which I am quite certain has helped decrease the neuralgia I experience. I also take Topamax or Topiramate, an anticonvulsant, for the neuralgia. These medications are proven to work along with others. It is extremely important to have a physician who you trust, as it really helps to be able to discuss these issues and resolve these problems.

      Best Wishes

      Merry Juliana

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    • Posted

      Thanks Merry for making time to reply.

      Yes, the Razer and related pains were where my original shingles attack occurred.

      I do trust my Dr. and I feel like most Drs she is treating the symptoms and not the disease. I live in MD. I wonder if I should go to Hopkins for a consult. According to basic blood work, my thyroid is managed.

      There is something not right in my body, and now that I am paying attention, it's been going on for a while. Recurring episodes of a group of 14 symptoms (that I can identify).

      Yeah, I know how shingles pain is, having suffered through shingles 25 - 30 years ago. From what I understand, a recurrence can present as tazer-esque.

      I do not have ongoing constant pain, but I do have something not right. The fact that you had frequent recurrences caused me to reach out (as the norm is not such).

      Was there a particular Dr or program at Hopkins where you had your consult?

      Thank you for replying and any information you can give me re: Johns Hopkins.

      Take care,

      Didi

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    • Posted

      Hi Didi,

      As you had T4 toxicosis, a precursor to Graves disease, an autoimmune disease, I would assume the recurrent episodes are linked.

      I am a Family Nurse Practitioner and have had to diagnose my own diseases much of the time, and have had to be assertive for certain treatments.

      As I have autoimmune diseases, I requested the consultation at Hopkins after I had a medical problem transpire at home. I did my research and found that Hopkins has a comprehensive autoimmune disease program. Depending on where you live in Maryland, you may wish to consider neurology at Georgetown in DC or Johns Hopkins University in Baltimore. Read the bios of the physicians, the specialty and interests of the physicians, and ask yourself what you hope to gain by the consultation. Neurology would be the specialty I would see.

      I hope this helps.

      Best Wishes

      Merry Juliana

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    • Posted

      Hi Merry! My name is Nikol, 30 year old female, and was diagnosed 3 months ago with internal shingles. Since no rash was ever present I never got a positive diagnosis for shingles. I have had an MRI so we know it isn't a pinched nerve. I am being sent to a specialist soon since it's not seeming to get any better. Stress seems to make it flare up worse than normal. Any suggestions on how to get a correct diagnosis? Or to treat the pain without pain meds? Lidocaine patches make no difference or make it burn more. I am in pain most of the time and have a 22 month toddler to chase around. Any advice would be so appreciated! Thank you!

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    • Posted

      Hi Nikol,

      I am sorry for your suffering. It is even worse when you have the responsibility of a child to care for.

      Could you please tell me

      1.the location of the pain,

      2.is it constant or intermittant

      3.the duration of the pain,

      4. the description ie quality of the pain.....Is the pain sharp like a stabbing knife, dull ache, burning lancinating electric pain, etc,

      5. Accompanying symptoms prior to and during the episode(s).

      The most accurate test is by scraping the vesicle, obtaining the fluid, and sending it for a PCR. Unfortunately, you have no rash or lesions. An excellent physician

      who knows Herpes Zoster Shingles should take an excellent history and physical. There are many accompanying symptoms with Herpes Zoster Shingles as anyone with recurrent episodes can tell you. I start my Famvir based more on these symptoms than the severe pain. I do not see a rash as I have it in my right ear.

      The only test which is not that sensitive unless the timing is correct is obtaining antibodies, IgG and IgM, via a blood draw of the Varicella Zoster Virus. The IgG high titer immunoglobulin informs the NP/physician that you have had chicken pox in the past, or shingles. The IgM high titer informs us that you recently had an episode of Chicken pox or Shingles, within the last six weeks. The antibody test is not that accurate as if the blood is drawn too early or too late, the titers will not reflect that you indeed have just had shingles. Medications such as corticosteroids or immunosuppressive therapy can also alter the results.

      When you ask for treatment for the Herpes Zoster Shingles, other than medications, may I ask why? Are you nursing? Again, it is helpful to know the location of the internal shingles. Do you have any other medical conditions?

      I would use ice on the area, or cool compresses. You might try Lidocaine or Benzocaine topically in a cream base, which might be more soothing than the Lidocaine patches.

      Also Google high Lysine low Arginine diet in herpes zoster. Many of the individuals who have recurrent episodes of Herpes Zoster Shingles find that maintaining a diet high in Lysine, low Arginine decreases the intensity and frequency of the episodes. Some take Lysine supplements, which I am not advocating, as there are adverse effects with them.

      I look forward to hearing from you in the morning. It is 2 AM here.

      Best Wishes

      Merry Juliana

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    • Posted

      Hi merry,

      I am 33 yrs old. I had chicken pox as a child. I have been under a lot of stress lately and have experienced some anxiety. But nothing i couldn't handle. One night I woke up at 3am with excruciating pain under my right shoulder blade. Felt like a hot knife cutting up and down my shoulder blade. I got a hot shower and used a heating pad and it subsided. Then a week goes by with no pain and then it came back with a vengeance. I went to the er and they said it's muscular and gave me a muscle relaxer it barely touched the pain. I suffered in agony another day and the pain spread to around my Rib cage to under the right breast. The doctor at the er diagnosed me with shingles. But I have no sign of a rash. They gave me the anti viral and gabapentin and naproxen. The pain is still horrible. It's been five days but still no rash. I'm scared that I'm misdiagnosed. I can't work in this pain and I run machines all day. I feel like I'm getting depressed living in this agony. I don't know what else to do.

      Report Reply
    • Posted

      Jennifer,

      First, I am so sorry for your suffering. As you are in agonizing pain and it sounds as if it is one sided, and perhaps burning or lancinating like electric shocks, it is most likely Herpes Zoster Shingles. The hot knife is an apt description. You need to obtain stronger analgesic medications such as an opioid like Oxycodone. I have recurrent episodes of Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years and twice in my right eye. You haven't been misdiagnosed. You have not been given the correct and strongest analgesic. Herpes Zoster Shingles is one of the most painful afflictions of mankind.

      Before or with the pain, did you have some of the following symptoms?

      Headache, aches and pains, fever, chills and sweating, malaise and fatigue?

      The physician who diagnosed it is sharp, as many miss the diagnosis, by the way. He failed in giving you an opioid, however.

      Please go back today and ask for something stronger. Also, you need to take time off from work. At least 2- 3 weeks and reevaluate as you need to sleep and rest.

      I know as I was a single mother with this, had this in my ear, was not diagnosed immediately, and now have the recurrent episodes. Please learn from the mistakes made on me. I am a Nurse Practitioner in the States.

      I am so sorry I did not respond immediately to the post. I was traveling and out of range of decent internet service.

      Best Wishes

      Merry Juliana

      Report Reply
    • Posted

      Hi Merry,

      I have been reading your posts here for the past two months as I have been struggling with what seems to be Zoster Sine Herpete.

      Thank you so much for sharing all of your wisdom and empathy with all of us.

      I am a healthy 35 year old who has recently been under a great deal of stress.

      I have had what I think are two, almost back-to-back rounds of Zoster Sine Herpete. First one lasted two weeks all in the same band from under my left shoulder to my left chest, precipitated by fever, malaise, itchy skin alternating with pain to touch. Lancinating, electric pain was intermittent all day and night lasting about 2 minutes at a time. It hurt to wear clothes, shower, feel the air on my skin. Dull pain was pretty consistent in between. Nothing was impacted by muscles at all. They had me do a push up test at the doctor.

      It passed after two weeks and moved to my other side on the exact same nerve path after I didn't take great care of myself for 5 days (travel, wedding, rich food, a few drinks).

      I took antivirals and steroids the first time which I think is why it went away in two weeks but the doctors wouldn't give me a second round and have been in the worst pain of my life for 5 weeks. 

      The latest of 5 doctors I have seen wants me to take an MRI to be sure it's not a spinal cyst. But the cost is astronomical and every signal points to shingles...She also didn't spend any time looking at medical journals and told me that every case of shingles she has seen has developed a rash. 

      Do you think it would be adventageous to do the MRI even if it comes at a great cost?

      I've been putting it off and following your dietary suggestions, sleeping as much as possible and pushing myself to workout again and push through the pain. I believe these measures are helping but I am still woken up every single night screaming in my sleep.

      Thank you again for giving me hope,

      Mimi

       

      Report Reply
    • Posted

      Mimi,

      First, I am so sorry you are going through this.

      Do you live in the States where you have a huge deductible or no health insurance?

      Are you eligible for help regarding payment for the MRI? Social Services, talk to hospital social worker for help, etc.

      I understand the neurologist's point to work the pain up. With the other symptoms you reported, it certainly sounds like Shingles. Unless you have severe kidney disease, you could have been prescribed the antiviral which would have done you no harm if you didn't have Shingles.

      Have you received any strong analgesic such as Oxycodone for the pain? Most physicians are abysmally ignorant of the diagnosis, pain and symptoms, treatment, and management of Herpes Zoster Shingles.

      Use cool compresses or ice over the area. Try Solarcaine with aloe to numb the nerve endings.

      I have seen and diagnosed Zoster Sine Herpete, and this physician is ignorant if she truly believes that as she has never seen it, it doesnt exist.

      You could adopt a wait and see attitude towards the pain. If it improves, then you know it was Shingles. If it worsens, get the MRI.

      A smart physician could also do antibody testing yo see if you have an elevated titer to Herpes Zoster Shingles. IgG would be elevated, as you had chickenpox. IgM shows acute recent Herpes Zoster Shingles infection. It is sometimes difficult to capture when the titer is elevated, but if it is, you have your answer.

      That is where I would start, as it is a relatively cheap test compared to an MRI.

      Where do you live, btw?

      Also, find new physicians. Ask nurses, they usually know who the excellent ones are.

      Best Wishes

      Merry Juliana

      Report Reply
    • Posted

      Merry you're such a star,

      Thank you for this reply and feedback!

      I do live in the states and I actually have what passes as decent insurance here but they still said it could cost me 2k out of pocket for the MRI. 

      I think I will wait a couple more weeks and see if it stays the same or gets worse as you suggest.

      In terms of pain I'm trying to manage with Advil and Tylenol because we're hoping to get pregnant soon. Timing is bad for relief but also probably related to the stress that got me here.

      I'm going to try a new doctor and ask for the bloodwork. They had me do a standard panel and all the results looked good. 

      Thank you so much Merry!

      Mimi

      Report Reply
    • Posted

      Hi,

      I love reading all your info.

      A question for you, would the titre be high if you've had the vaccination? The

      Reason I ask is I got the shingles vaccination, then 3 weeks later came down with the virus. I never got the rash, just horrible left breast burning. I was worked up for so many other things, CT of lungs, mammo, us , gallbladder removal. Finally someone suggested possible shingles. I had a to treat done, it came back 2090. I had had one done 6yrs early for employment and it was 64 at that time. I have had one dr say the reason it is so high is do to the vaccinatio what is your opinionew?

      I have been suffering with what they now says if PHN pain, constant burning in my left breat/ sternum area, some time burning of left cheek. I guess I count my self lucky that I never got the rash but living since Nov 2015 with constant pain/ burning is so awful.

      Report Reply
    • Posted

      Hi iladale!

      I do remember you!

      They should have tested the IgG and IgM antibodies. The IgG indicates past exposure to the varicella. You should ask if they did an IgM, as that shows an acute infection. Your IgG antibodies should elevate after immunization.

      Regarding the diagnosis and treatmentof Herpes Zoster Shingles, and other diseases) my own philosophy is:

      If it walks like a duck and talks like a duck...in other words, you don't need a lab test to confirm this diagnosis.

      What needs to be treated aggressively is the never-ending pain!

      I am so sorry you are still suffering from this dreaded complication.

      Have you seen a neurologist or pain management physician for treatment of the PHN?

      I know I have listed the medications for PHN.

      Are you on any medications now?

      Best Regards

      Merry Juliana

      Report Reply
    • Posted

      Yes, I tried so many things with no sucess. Gaba did nothing, Cymbalta made me weepy and depressed. I take 3 tramadol a days since I still need to work. I rub blue on it, this helps a little

      The last neurologist didn't know what to do with me and the only advise I get from my doctor is to look for a possible dr who specializes in shingles pain which is no help at al in other words, she has no idea what to do with me.I am looking into trying to find some cbd cream. I heard this can help with pain. Feeling so helpless and tired of no normal life! l

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    • Posted

      Hello there!! I pray your feeling better by now your experience sounds so similar to mine; I didn't have a rash either.... I was wondering how your doing now and what was your course of treatment did you find anything that works. I KNOW I need to stop allowing others to stress me out this is my 2nd time and both times I was under alot stress because I don't like to be rude to ppl and I just take there crap and not say anything an in turn I'm stressing and taking a beating in my body. I can say after this PAIN I got it this time. PSA: people better treat me how I treat them or they WILL be hearing from me I will not just keep quiet holding it all in. This pain is NO joke! Anyway its been some time now I was hoping you have some good tips because yes thats how they want to treat everything these days is with anti-depressant....whats up with that? I would wish this on anyone! Look forward to your response!!!

      Jwil44

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    • Posted

      Hello Merry,

      I am wondering if I have the shingles!! I have lower back pain but I do know that I have a herniated disc.(had mri resently) . Also I have  headache, sweats and chills. 

      Thank you for any of your thoughts on this.

      Becky

      Report Reply
    • Posted

      Hi Becky,

      I had written a long response,yesterday, but I just checked, and it didn't send.

      I have to restart my computer.

      Merry Juliana

      Report Reply
    • Posted

      Hi Becky,

      While it is more difficult to differentiate the pain between Herpes Zoster-Shingles and a herniated disc, it can be done.

      In the pre-eruptive stage, you can have the following symptoms: headache, fever, chills and sweating, aches and pains, malaise, fatigue and exhaustion.

      Usually, but not always, the pain is unilateral, on either side of the spinal cord.

      Usually, but not always, the pain is followed by a crops of vesicle-blisters over a period of five days.

      The pain is burning or lancinating, and even the skin over the painful area is tender or painful to touch.

      It is impossible to diagnose anyone without seeing them, taking a complete history, and performing a physical exam.

      I would see a clinician if you feel you might have Shingles or your back pain has changed.

      Please let me know how you are.

      Best Wishes

      Merry Juliana

      Report Reply
    • Posted

      you just answered all my concerns. I CANT GET RID OF SHINGLES IT comes back every 2-3 weeks. I WAS TOLD i cant be a CNA. what kind of DR CAN HELP ME? IT ALSO EFFECTS MY STOMACH DIGESTION. THANK YOU FOR SHARING. I HAD THE SHINGLES SHOT WHEN MY DAUGHTER GOT SHINGLES AND HAS KIDNEY DISEASE BUT THE SHOT DID NO GOOD... NERVE PAIN JAW PAIN NO SLEEP, low appetite then diarhea, theb cold sores. I ALSO TAKE KAMBUCHA PROBIOTICS AND FIBER CHEWIES. i read avoid coffee. TEA OK

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    • Posted

      Dear Merry Juliana,

      I so appreciate you! I have just been experiencing the worst face pain on my right side, no rash, and taking VAKACYCLOVIR had no effect! I've been taking that several times a year since 2016, this time it had no effect so I took your advice and had my doctor prescribe FAMCICLOVIR - it helped after one dose! THANKS so much! I'm 59.

      Report Reply
    • Posted

      Dear Elsabe!

      I am so happy that the Famciclovir helped you.

      As you are obviously suffering from Zoster Sine Herpete, can you try to get the Shingrex vaccine?

      It has been helping me thus far from the recurrent Herpes Zoster-Shingles every 3-5 weeks in my ear, mouth, throat, and scalp for the past 22 years. I haven't had an episode since November! The agonizing headache has ceased. My energy has improved, as well!

      If you are in the UK, you need to be 70 years.

      Best Wishes and Congratulations!

      Merry Juliana

      Report Reply
    • Posted

      Elsabe,

      If you are in the States, you are eligible for Shingrex at age 59!

      It has been a game changer for so many!

      Your news makes my heart sing!

      Merry Juliana

      Report Reply
    • Posted

      So happy I found a CVS with one vial of Shingrix! All the other pharmacies have long waiting lists! Have been without symptoms for almost a week so perfect timing!

      Report Reply

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